“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a bad day while disregarding my…
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Living with spinal muscular atrophy (SMA), I’m often met with this question from others: “How do you do it?” Upon learning how much goes into living a life full of health issues and weakness as well as…
This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I thought it’d be different. I…
After closing the tab on my browser, I couldn’t help but wonder how much progress I’d made in the past year that I failed to notice. My words on the screen were there in plain sight, from a moment…
If you’ve perused my columns in the past, you’ll know I’m a big advocate for teaching children about disabilities. As a woman in a wheelchair who looks different from the average person, I’ve been the subject of…
Late last year, I embarked on an unexpected journey to self-discovery. The past several years had been an uphill battle with my health, each day bringing its own relentless fight. The good news was that I was surviving…
When I was a little girl, I loved searching for dandelions at the first sign of spring. My mother would pick one off the ground for me, and I’d excitedly use all my strength and breath to remove the…
There’s a memory that has sat quietly in the back of my mind for a while. After it happened, I wanted to write about the rawness and reality of how I felt in the moment. Yet, a gut feeling…
Peeking up from my pillow and seeing that it was 4:55 a.m. was an unpleasant surprise the other day. I had slept only a whopping 20 minutes longer than the night before, and it was becoming a pattern. Having…
I have a confession to make. When the time comes to write this column, I often cry out to my parents, “What do I write about?!” I’m usually met with eye rolls. I don’t blame them. I’ve asked…
In 2019, I had my first videonystagmography (VNG) test. A VNG test uses ski-like goggles to test a person’s involuntary eye movements when moved into certain positions. Inside the goggles, a camera tracks these movements while the doctor…
A few years ago, I bought a book that I thought would change my life. It was during my self-help era, when I devoured any book I could find that would make me a better version of myself. With…
With Super Bowl LVIII around the corner, it’s a bittersweet feeling for avid football fans like me who enjoy watching countless hours of football every week. On the one hand, the thrill of the most exciting game of…
